Tag Archives: Actemra

Quick Update: Biologic Medication Changes

24 Friday Jul 2015

Posted by in Rheumatoid Arthritis

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I am off the Actemra and back on the Orencia. On non-work days I felt okay. Unfortunately, on my work days I might as well have not been on anything at all! No. That didn’t work for me. While I was on the Orencia I was at least functional and…active! It is almost the end of July and I have only been out to work. My favorite season is almost over and I haven’t enjoyed it once. The actual eff??

 

On the flip side, the Orencia obviously did not work well enough. It got me through part time work and some full day schedules. I rarely had to increase the prednisone and I certainly never had to use a walker or cane but, the moment there was excessive stress (read: nursing a dying dog) it quit on me. There was no way I could keep a regular full-time schedule on this medication.

There are a couple of meds I have not tried but my doctor is dead set against me on them. I trust his judgement and from my knowledge of them I am not too keen on trying them either! So, what next? There are new RA medications on the market every year but, at the moment, we have exhausted our options. My rheumatologist referred me to one who specializes in clinical trials.

 

Yes. Clinical trails.

I thought those only existed in movies. Hah, just kidding!…but I think you know what I mean…I never imagined I would consider a clinical trial for ANYTHING.

I have my first appointment at the end of this month so I guess we will find out what the following steps are…I don’t even know what is in store for me!

Until then, and in case I do not qualify for any trials, I am back on the Orencia. I had my first infusion today so I expect to feel a lot better tomorrow! Fingers crossed!

Hi, my name is Monica and I have RA.

Actemra Infusion | May 2015

17 Wednesday Jun 2015

Posted by in Rheumatoid Arthritis

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I never updated on my second infusion, did I? My main goal, with these posts, is to archive my progress while on Actemra. This is for my own personal benefit and for those who are considering this medication. Except for the brand’s website there is very little information available. I sometimes feel like I am running blind.

 

But, first…

A quick review of the first infusion. I handled it well. I experienced no pain, dizziness or fainting during the treatment. I felt slightly nauseous but assumed I needed to adjust to the new medication.

Unfortunately, it was more than a little first reaction. The nausea got worse. I could not keep anything down, including water, for three days! The intensity subsided but I was still nauseous for a week. Stomach upset and ulcers are side effects of Actemra but are also side effects of other TNF inhibitors and thiis was the first time I reacted so poorly to a biologic.

I had a history of medication-induced ulcers and chronic inflammation of my stomach lining and duodenum. At the time, my doctors prescribed Reglan. As long as I maintained my insanely strict diet, Reglan maintained my nausea. After my ulcers healed and I received the all clear to return to my normal diet I kept a couple of these pills on me at all times. I rarely needed them but they were effective.

 

Fast forward to Actemra: Reglan did absolutely nothing. It actually made the cramping worse. My rheumatologist contacted my gastroenterologist and she suggested Zofran.

Story time: Saachi was prescribed Zofran 8mg tablets, as needed for nausea, during her chemotherapy. After she passed away, I donated the remaining pills back to the hospital. This was literally one month before I, myself, was prescribed the exact same medication! While my rheumatologist frowned upon taking “animal pills” I personally had no problem with this. Working at a vet clinic I knew these were good human-grade generic medications. It doesn’t really matter now but I just thought it was funny!

 

Zofran was a stronger anti-nausea I took 2-3 hours before the infusion. It made me groggy so my father drove me (best dad ever) to the appointment.

When Saachi took this medication she drooled and drooled and drooled and lapped up water like it was her only job in life. I now know why: Zofran tastes disgusting. It is a quick-dissolve tablet I place under my tongue. BLEARGH!

 

Now onto the second dose…

 

I tolerated the IV well. I was not nauseous during the infusion or even afterwards! I alternated between the Zofran and Reglan for intermittent stomach upset but the nausea was nothing compared to the previous month.

Where am I now?

I am three weeks post-infusion and I am beyond fatigued. I am past exhausted. I became noticeably more tired last week. I slept more deeply during my naps. Usually, I lay down, close my eyes and rest. I am more or less conscious. Lately, I’ve been out like a lightbulb. I also cannot wake up in the mornings. I am not a morning person, but, when I have to, I wake up early and respond well to my alarm(s). Now, I snooze for at least 15 minutes and over the last few days I overslept by an hour and a half (Thanks, pets, for not waking me up)!

I am only two months into this new medication but this is not cool. Just the idea of being awake makes me more tired. Is this how I am going to feel for four more months until I know the full effect of this medication? This is a really unfortunate way to start the summer!

 

Hi, my name is Monica and I have RA.

Dry Brush and Stamped Nail Art for First Actemra Infusion

25 Saturday Apr 2015

Posted by in Nail Art, Rheumatoid Arthritis

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During my February monthly rheumatology appointment, my doctor tried to convince me to change medications. The Orencia hit its usual plateau and the inflammation slowly crept back in. I don’t really remember that doctor’s appointment. I don’t even know if I understood a word he said. I was so exhausted, foggy and painful nothing made sense. Life didn’t make sense. Well, if my biologic medication was no longer working it was a no-brainer to switch, right? Unfortunately, Saachi was still recovering from her emergency splenectomy (spleen and tumor removal) and would start chemo in the following weeks. With the cancer running rampant within her bloodstream I could not take the chance of getting any worse and not being able to care for my dog.

As the Orencia faded and the Actemra built up in my system there would be a period where I would feel worse of; mostly because my other medications were not doing enough on their own. I had to take care of Saachi. Reluctantly, my doctor agreed it was my call and we could wait.

I had a follow-up a couple of weeks after Saachi passed away and my doctor was still not pleased. I had more inflammation in my joints than in recent months. Something had to change. I had a little more wiggle room to try out new medication as my father was back in town so he could help me. I reluctantly decided to switch to IV form of Actemra.

Actemra is like any other TNF inhibitor. It suppresses the immune system at a specific spot. I was afraid my sinus infections would return. They were so debilitating. I could not care for my pets because my allergy to their dander set off these headaches. Since each biologic medications hits different points of the immune system there was an unlikely chance my sinus infections would return.

 

I tolerated the infusion well. It took about an hour since the technician wanted to make sure I did not have a reaction.

Even though I did not have any reactions during the IV I became very nauseous afterwards. The persistent nausea lasted about 24 hours but I still it intermittently. I did not notice a difference in my RA symptoms. I still felt painful and swollen.

 

Anyways, on to the nail art. I created a dry brush manicure topped with stamping. The infusion liquid is clear which is no fun for nail art so I landed on blue! I then stamped some molecules and bubbles.

 

Dry Brush and Stamped Nail Art | The Rite of AgingI started with Essie Mademoiselle as my base.

I dry brushed with a mix of Orly Sec n Dry, China Glaze UV Meant to Be, Milani Power Periwinkle and Sally Hansen Blue My Mind.

I stamped with Milani Black Swift, MoYou London plate 3 from the Scholar Collection, Essie No Place Like Chrome and Pueen Cosmetics plate PUEEN36.

 

Hi, my name is Monica and I have RA.